Many people ask me why I volunteer and why I do what I do. If I reflect on my answer to them it’s primarily because I enjoy my voluntary work and find it incredibly rewarding; there’s a lot of job satisfaction in helping another family by signposting them to information about r(20) or putting them in contact with other families that they can talk to. My European work has extended my horizons considerably, as I’m beginning to understand the wider world of rare and complex epilepsies and how we have so much in common in terms of unmet needs. I have thirst for knowledge and there’s so much to learn and yet there’s so much work to be done to improve lives for those with rare epilepsies.
The other week was National Epilepsy Week in the UK and I thought I’d share with you what I got up to…
Monday 20th May
8:45am – Having just returned from a trip to Bucharest, where I helped facilitate some ‘Sharing of Good Practices’ sessions amongst my European patient advocacy (EPAG) colleagues I hit the ground running this morning with a breakfast meeting with Nik, our newest volunteer20 at Ring, to assign him some tasks to help us with researching funding opportunities through pharma companies for a potential future r(20) families meeting. Now to hit the gym for a couple of hours of ME TIME!
1:00pm – Write up my to-do list for this week! Catch up with general r(20) admin stuff having been out of office last week.
3:30pm – Telephone call with Yvonne, one of our member families to discuss an idea she has around r(20) families listing what medications they’ve tried and what has/hasn’t worked. Yvonne’s view is that we, as patient families, know what has been effective or otherwise and together we can educate and inform the healthcare professionals who treat our loved ones…we continue this conversation later this evening (much to discuss).
4:30pm – I jump on to a webinar as part of my continuing training to become a more effective Leader, part of the EURORDIS Leadership School. Today we discuss ‘Conflict resolution’…now where might I use this?
6:00pm – Brief call with Dr Amy McTague a researcher from Great Ormond Street Hospital and Institute of Child Health about presenting her new research proposal to our EPAG “A newer development approach to severe epilepsy in children; using stem cells to find new treatments” – very interesting topic indeed. Better go and feed David!
7:30pm – After issuing the agenda for Thursday’s EPAG meeting I resume my conversation with Yvonne and resolve to discuss further with the other Trustees.
Tuesday 21st May
7:30pm – After a long day at work I pick up on my emails. Don has drafted our latest strategic and tactical plan for what we as Ring20 want to achieve over the coming year following our Trustee meeting a few weeks ago, so I review and add comments. I formally accept an invite to a meeting with Prof Helen Cross, Emma Williams and Dr Archana Desurkar at Keto College on 4th June to discuss how we can take forward some of the findings of our latest PLRH research survey on ketogenic diet.
Wednesday 22nd May
7:00am – A ‘what time do you call this?’ meeting! Worth it though as its an initial meeting with EpiCARE about creating information leaflets for the various rare and complex epilepsies – an initiative put forward by us as Patient Advocates. Great news, we’re going to start work on a pilot with 2 epilepsies, one of which being r(20) syndrome – PROGRESS! Now off to do the paid work stuff for the day…
7:00pm – Phone call to Dale, one of our volunteers for a brief catchup. I edit and upload two new Personal Stories to our website and create social media posts for sharing over the coming days as part of National Epilepsy Week. Find time to write a summary of the learning and my recommendations from the ‘Sharing Good Practice’ sessions from Bucharest for our EpiCARE Coordinators (Prof Helen Cross and Prof Alexis Arzimanoglou) to consider as to whether we can adopt/adapt any similar practices in our ERN. All initiatives involve patient engagement.
Thursday 23rd May
7:00pm – After another full days work it’s time for our regular monthly EPAG call. We are very lucky this evening to have 2 guest speakers: Prof Helen Cross presents the 3 to 5-year plan for EpiCARE (so we can determine our EPAG objectives for the coming year) and Dr Amy McTague presents her research proposal creating ‘mini-brains’.
Friday 24th May
12:30pm – A couple of hours at the gym now time for some r(20) admin stuff…
2:00pm – Call with my new mentor Ana Mingorance a neurobiologist from Spain, as part of the EURORDIS Leadership Programme. Ana has worked for Pharma, was with Dravet Spain for a number of years and is currently working alongside the CDKL5 patient organisations, so she has a wealth of valuable experience to share.
3:15pm – My regular monthly Skype call with Kim A, our grant funding officer, to see how she’s getting on with submission of grant applications for projects including an r(20) families event, funding for paid staff and future newsletter production and printing.
5:00pm – I’ve been asked to provide some information to another rare disease patient advocate, Nuala whose child has a really ultra-rare epilepsy Schinzel-Giedion Syndrome, of which there are only 50 known cases. Nuala’s in the process of setting up a patient support group so was looking for some advice and referred to me by Nicola from Rare Revolution. Nice to be able to give something back.
Saturday 25th May
10:00am – 8-mile morning run, blows the cobwebs away…
1:00pm – My usual Saturday taking David to karate and gym when I spend a couple of hours catching up on Ring20 stuff. Today I’m writing a blog for Genetic Alliance UK on why I think we should all sign up to #ProtectERNs.
Sunday 26th May
Afternoon out with friends, the sun is shining, so making the most of it!
So, how was your week? Do you or would you consider volunteering? If so, I’d love to hear your stories…
Allison Watson, Co-Founder for Ring20 Research and Support UK CIO